We know that children with CHD sometimes struggle in school and have trouble paying attention or interacting with friends. This study looked at how adults with congenital heart disease (CHD) learn and think about the world around them.
The study began in November 2020 and the last participant was enrolled in March 2023, with 501 consented to participate.
Check back soon for a summary of key study findings!
Males and females aged 18-30 years who have moderate or severe CHD.
Activities in the study included:
1. Completed questionnaires
2. Reviewed medical history
3. (Optional) Blood or saliva (spit) sample collected for future research and stored in biobank.
Each participant had one visit that lasted about two hours.
Results of this study are currently being analyzed. The PHN is grateful to all of the families who participated in this study.
S. Cohen, Journal of the American College of Cardiology. 2025 Sep 2; 86(9):640-655.
Children born with congenital heart disease (CHD) often face difficulties with thinking, memory, and attention. However, we do not know if adults with CHD experience the same issues, especially when combined with other heart problems that develop in adulthood. The Multi-Institutional Neurocognitive Discovery Study in Adult Congenital Heart Disease (MINDS-ACHD) was performed to see how common it is for adults living with CHD to have difficulty with brain function. The study found that these problems are indeed common among adults with CHD. Problems with brain function may be related to factors like education, mental health, weight, and heart rhythm problems. The findings from this research will help doctors better understand and treat brain-related concerns in adults living with CHD.
S. Cohen, American Heart Journal. 2023 Aug; 262:131-139.
Children with congenital heart disease (CHD) often have a hard time thinking, remembering, or paying attention. But we don’t know if adults with CHD have the same trouble, and we don’t know how CHD reacts with other heart problems that happen when you are an adult to affect the brain. This paper describes a study called, the Multi-Institutional Neurocognitive Discovery Study in Adult Congenital Heart Disease (MINDS-ACHD). The purpose of MINDS-ACHD was to see how common it is for adults living with CHD to have difficulty with brain function. This paper describes how MINDS-ACHD was designed and run at different hospitals in the United States and Canada. The results of MINDS-ACHD will help doctors diagnose and treat adults living with CHD who have concerns about their brain function.
A. Panigrahy, J Cardiovasc Dev Dis. 2023 Sep 6; 10(9):381.
Babies born with heart disease are much more likely to live than previously. In the 1960’s, less than 10% lived into adulthood, but now over 90% do. Therefore, there are many more adults living with congenital heart disease than there used to be, and it’s important to study problems they have with attaining an education, holding jobs, and having a social life. While the MINDS Study evaluates these, we describe a sub study looking at brain images with the goal of understanding how brain injuries caused by heart disease are associated with mental abilities. Results from this research will help shape the medical care of adults living with heart conditions with which they were born.